Dear Family and Close Friends,
This e-mail my upset some of you and that is not my intention. My intention is to keep you informed and give you the information as we know it. Also, this is intended for you to know but to understand.
Know this: Daniel will not be defined by any diagnosis in this family. Daniel will be defined by the amazing sweet little boy that he already is. Also before I go on even the doctor said that Daniel has a "mild" form of the spectrum. Also, Daniels therapists have said that he is "the bomb," meaning of course that they are impressed by his progress. He really is doing very well.
So the family of disease that Daniel has is called Lissencephaly. You can read about it here:
http://www.ninds.nih.gov/disorders/lissencephal /lissencephaly.htm
and here:
http://www.lissencephaly.org.uk/aboutliss/index.htm
The form that he has is called Pachygyria.
The reading may not be fun for any of you so please don't do it if you don't want to do so. As with all family of diseases, this one comes with many family members and each has its own degree of severity. We do not have any indication as to what specific category Daniel fits into. Also, according to the doctor, Daniel will define is own prognosis and so may not see some of the characteristics of this diagnosis that others will have. We just have to wait and see.
Jason said it best: none of us know what will happen tomorrow or next week or in a few years from now so it is best to focus on today and what is happening today. Today, Daniel has decided to sleep in because he was up at 2 in the morning just chilling with his mama. Today, Daniel will grab new toys and eat new food and smile his wonderful smile. Today Daniel will love his family and show it in the way he lights up when any of them are around.
I am not a very religious person and neither is Jason but I am not above asking for any prayers or thoughts of encouragement not just for Daniel but for all of us.
Love,
Lara
I felt the need to follow up Lara's lovely message with my own to the same folks:
Hi. Daniel's dad here. I don't mean to butt in, but I thought it would be worth mentioning something briefly regarding Danny's condition and recent diagnosis...
The take-away from all of this is that we are NOT putting on a brave face in a time of adversity. Instead, we really do believe that Daniel is doing fine and that we have no more reason to worry about his future than we do about Alison's or any more than any parents do about their kids.
If you follow the links that Lara provided, it's pretty scary. But really we're not scared. The bottom line is that Daniel is not at all suffering and he is making developmental progress -- grabbing, talking, sitting up, etc. These more observable conditions are what's really important.
All the best to you and yours. Have a great weekend.
6 comments:
As mentioned above, an email announced Danny's diagnosis before we set up this blog. The comments here were replies to the original message.
From Jen Walsh:
Well as fancy and intellectual as those names sound, I am with you guys, I think the name Daniel suits him much better. I for one am not going to tilt my head to the side and talk in hushed tones like people sometimes do (and well-meaning people at that) when news like this has been received. Your little boy is achieving great things every day and by all accounts is such a happy guy. There are some kids out there who are applying to Harvard at the age of 4 who are just miserable and your household is just ooozing with love which is just wonderful.
When I first read about ALS after Mum's diagnosis I just had to stop, quick. I knew she just wouldn't be some neat little category. It is helpful to have the information and then watch Daniel do different things that aren't mentioned, or be the exception to the rule.
I am not praying for you in the traditional sense because frankly I don't know how but I do my best to meditate regularly and focus on my family.
LOTS of love to you both and Alison and Daniel xxxxxx
Jen and Tim xx
From Mike Brown:
I think you guys have exactly the right attitude in this - it is less about what he "has" and more about what he "does" and how *he* feels. It is very easy when reading medical text to make it a black and white issue. Fortunately human beings and their potential can't be defined in words alone.
From Maxine Sacks:
Hi, everyone! I, too, wanted to comment that I am so impressed with how both Lara and Jason are handling this. As someone who has worked with children with unique needs, I truly believe you are focusing on the right things, while still developing an understanding of what is going on inside of Daniel that no one can see. That understanding is important, just as it would be important to diagnose someone with diabetes or bipolar. It helps make sense of the actions you see. However, the actions and the abilities are what is most important. Every child is unique and Daniel just helps us all remember that no children can be lumped into developmental categories. Please let me know if you would like more resources and I'll ask some of the special education and adaptative professionals I know.
I'm so impressed and can't wait to meet this wonderful young person!
From Susan Attermeier
I join with the rest of your virtual support group! Danny is his unique sweet self, in need of special help but not defined by a diagnosis. In a strange way it must be a relief to know at last what the deal is. I know that has been a source of frustration and you have plowed through the jungle of MD appointments etc to get the info you needed. So you have the medical part. More important is the development part, and it sounds as if Danny is making good strides and that you have a good therapy team. Most importantly, he is nested in a loving and supportive family. We don't know what the future will bring (for any of us). All we can do is keep focussed on what is in front of us and find the joy in every day.
From Jennifer Semel:
I would echo the sentiments of others who have written to you. Having a 'diagnosis' is a mixed blessing. I frequently see children with developmental brain anomalies and each child is very different ... each outcome different ... each child's progress very different.
The MRI will not define Daniel .. Daniel will define Daniel. To date he has made nice progress.
Personally, I'd focus on that and not hesitate to call on family and friends for support (both time and emotional). You both appear to be doing just that.
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